Hi, Harry. I'm sorry about your daughter. She's close to my age. It's a shame that in the US, colon cancer screening is not taken seriously until after age 50.
I started Stivarga in September of 2014 and stopped in January 2015. It was still working but I'm now on a clinical trial, and they wanted me to stop taking it. In other words, I didn't quit because it was no longer effective. If I am kicked out of the trial, I will likely go back on Stivarga unless they find another trial for me.
re: opting out of chemo. I was supposed to be dead by last Christmas. Last fall, I was not doing well. I had lost a ton of weight, had no energy, and was largely bedridden. Nearly all the chemo drugs had failed and I was inoperable. After the failure of my last clinical trial, both oncs (mine and the research doctor) suggested Stivarga, which was new. I figured, what the heck, I'll try it. I took it for two weeks and my stomach felt queasy so I stopped it. I went to the beach for two weeks, and just stopped taking it. After the beach trip for some reason I decided to try it again. But I was a really bad patient and some days if I didn't feel like taking it, I didn't! Well, first onc visit afterwards, he checked my cEA and it had dropped several hundred points! OMG! So then I was motivated to keep on taking it, which I did. Long story short, I lived past Christmas and was able to get into a clinical trial. Stivarga gave me a nice Thanksgiving and Christmas with my family, and the time to make the next leap.
You're right about the palliative care option, and your daughter will know when it's time to do this. I'm prepared as well. It's something we all face. I was there last fall, but unexpectedly, I was at the high end of the Stivarga bell curve and it worked for me. You never know.
good luck to your daughter and to you as a supportive parent.
RT, 4 liv, 5 lung
2/13 Xeloda 4k mg/d
7/13 DC VAX,1k mg/d metro Xel
11/13 Erbi, Irino
6/14 clinical trial lirilumab, nivolumab
1/15 clinical trial immunotherapy (young TILs)
RT, mets to liv, lung, adrenal, lns